Intersex activist | filmmaker | consultant

Once during a video chat with another intersex person, I saw the word “Obama” scribbled on a white sheet of paper hanging up on the wall behind their head. When I asked them about it, they laughingly replied, “Oh, that’s my kill list.”

It was a joke she said. I didn’t see the humor. She was white.

Racism runs deep in this country, and as such, it’s present in white spaces such as my intersex community.

This article is my attempt at exploring the effects of whiteness, and it’s counterpart anti-Black racism, on the few Black folks in the intersex movement.

But how did I end up on a video chat like that, and now here writing an article like this? To answer that, let’s go back, way back to a time when I was 19 and at my first intersex support group for people with my particular intersex variation known as Androgen Insensitivity Syndrome, or AIS.

When I received my conference name badge, inscribed were the words “Women’s Support Group.” Not intersex. Not even AIS. Just, women.

I found that interesting since I had just discovered that people with AIS, like all of us at that conference, were born with XY chromosomes.

During the opening keynote, I looked around the room and saw almost all white faces.

Before the first session officially began, a person from our group hastily stood up and tightly shut the doors, while another volunteered to close the shutters.

Prior to attending, I spent most my life in hiding. In 5th grade, the reality sunk in that I wasn’t like the other kids. I had to go to the doctor every 6 months and take pills to go through puberty.

I was also made to feel different by the others because I was a mustached, hairy, flat chested, part-Mexican, no period having girl.

I became obsessed with normality. Unfortunately, I made the mistake of confusing normal with the white girls in school, and their white femininity, that I could never completely attain.

I attended the intersex conference to realize what it could feel like to finally stop hiding. Instead, our collective fear of someone finding out who, and what we really were, had me feeling trapped – again.

When I got home, I kept thinking about how heteronormative, white, and claustrophobic the space felt. Why were we so afraid to put the truth on our name badges? Perhaps like I — who in 5th grade hoped that white girl normality could save me — our group believed our salvation was found in assimilation.

If my (at the time) thin bodied, light-skinned, gender conforming, straight-passing, college student self felt uncomfortable, how would it feel to be Black and intersex in that all-white space?

To examine the impact of our movement’s whiteness, and give our movement an opportunity to reflect on the ways we may have inadvertently contributed to anti-blackness, I called up and interviewed two of my friends, who are Black intersex activists named Lynnell Stephani Long and Sean Saifa Wall.

I wanted to capture and present their experiences in order to assist us in thinking about ways we can become better comrades to Black intersex people in our community.

1. The Segregation in Our Intersex Movement Is Real

The intersex movement has been mostly white since day one. Consequently, it’s necessary to ask ourselves if we’ve inadvertently created an atmosphere that urges Black intersex people to put aside their Blackness — and the oppression linked to it — in order to focus on our collective goals.

In creating this type of environment, it appears our community hasn’t yet been able to connect the dots between Black and intersex people’s oppression — which Saifa reminded me are both rooted in state violence — and our liberation.

Black intersex folks who’ve lived in isolation and have dealt with segregation in their daily lives shouldn’t have to contend with similar experiences once they’ve finally found, and entered our community.

I’m not talking about highly visible institutionalized segregation like the Jim Crow era when Saifa’s uncle, who was also intersex, was forced to sleep outside on the porch of his hospital after a surgery.

I’m talking about the low-key, harder to detect, segregation.

The kind that just takes for granted that the majority of people in the room will always be white. The type that may have a few Black and Brown faces sprinkled here and there, but on a vanilla frosted cake. Is there a path forward?

Sean Saifa Wall, a Black trans intersex activist and collage artist based in Atlanta, reflected on this question by looking back on his time spent as the former board president of an intersex non-profit. Saifa captured why increasing representation shouldn’t be the endgame.

“I think I made the mistake of thinking we need more people of color… but what does institutionalized white supremacy do? It brings in Black or Brown faces who won’t challenge white supremacy — and that’s how white supremacy perpetuates itself. You don’t need white folks to perpetuate it, you just need folks who are invested in white supremacy.”

When I was younger and mistakenly believing that whiteness was the norm to strive towards, I ended up internalizing racist ideologies and, as a result, never fully connected on a truly deep BFF level with my Black friends. Perhaps our movement, and its longstanding quest for acceptance, has created a similar divide.

The global intersex activist network consists, to my knowledge, of less than only 5 Black intersex activists. One of them is Saifa.

2. One’s Race and Intersex Identity Overlap

Born amidst racist flames that attempted to level his neighborhood, Saifa was brought up whilst his borough, The Bronx, was attempting to rebuild itself.

“When I was younger,” Saifa recounted, “I realized I had a different body. Then, due to interactions with NYPD, I was made to know that I was different in another way as well.”

As he got older, Saifa came out as queer, intersex, and trans to a mother — and a world — who wasn’t always ready or eager to respect his intersecting identities. Regardless, his Blackness, sexuality, and intersex identity were always interwoven.

Unfortunately, I’m afraid our community hasn’t figured out ways yet to allow people to show up as their whole selves.

For instance, on the international level, it’s become a known issue that intersex activists from African countries don’t get similar amounts of representation, or speaking time at gatherings. And nationally, our support group meetings rarely, if ever, have been led by Black intersex folks or had sessions dedicated solely for Black intersex community members to come together.

It’s only in the past few years that single Black folks are sitting on boards, or in staff positions of our organizations. There’s also never been, to my knowledge, any Black clinicians present at our Continuing Medical Education (CME) sessions that happen before our support group conferences each year.

Race, especially as it relates to anti-blackness, feels as though it’s at times an elephant in the room.

For me, this elephant peeped its head out when I realized it had become a tradition for one of our non-Black community members, who I love and cherish dearly, to sing Macy Gray’s “I Try” — in Gray’s uniquely raspy voice — at the annual talent show, which is supposed to provide a fun contrast to the rest of the conference.

The audience, if it’s a diverse year, might have a handful of Black folks. This year, there was only one person. I can’t imagine how isolating that experience might have been for them.

And this bring me back to the story I shared at the beginning, about the person who had Obama on a hit list.

Often, racism perpetuates itself by wearing the mask of a “joke” or “fun,” but racism is never a joke and the mask just presents one more hurdle in calling racism out.

It’s time us non-Black intersex people become more aware of our whiteness problem.

We need to keep having difficult conversations about race and oppression every step of the way.

Most importantly, we need to show up the few Black intersex people we do have in our small community, and check in with them to see if there’s anything else we could be doing to have their back.

We can challenge white supremacy in our movement just by asking Black intersex folks in our community what they need to feel safer in our collective spaces.

For our movement to be successful, it’s imperative that Black intersex folks feels they can participate as whole persons.

Likewise, intersex people have been rendered hermaphrodites and featured in freak shows, gawked at as monsters to at on TV, disproportionately put up for adoption, pumped with artificial hormones, robbed of their reproductive organs and genitalia, selectively aborted, raped, and brutally murdered.

Hyde Park, a pocket of wealth and whiteness on the South Side and home to the University of Chicago (UofC) Hospital, is where Lynnell’s mother took her as a child for doctor appointments.

Lynnell shared memories of that time stating, “My mom wasn’t given the tools she needed to make informed decisions.” As Lynnell grew older, she also “wasn’t taken seriously at first by [her doctors] either.”

Low-income and single mothers of color, labelled unfit by society, experience discrimination. Lynnell’s mother went to U of C seeking care, not charity, for her child. Seeing a golden opportunity, Lynnell’s doctors manipulated her mother’s financial status and turned the situation into a charity case anyway.

“They told my mom they were doing her a favor because they weren’t charging her.” In the doctor’s mind, they were participating in an equal trade with Lynnell and her mother.

To Lynnell, it was torture. “For eight years, every summer, for at least a month, I was put on different drugs, experimented on, given unnecessary procedures and manipulated.”

Exploitation of marginalized people by the MIC for their gains, especially in teaching environments, has been well-documented. Exploitation specific to Black intersex patients has yet to be researched. Lynnell’s doctors, I imagine, took one look at Lynnell’s mother and decided a poor Black woman wasn’t powerful enough stop what they had in store for Lynnell.

“I don’t know many white people that were used as guinea pigs like me,” Lynnell said.

4. Doctor’s Aren’t the Only People Attempting to Erase ‘Difference’

Intersex people are pretty familiar with secrecy, shame and stigma thanks to the pathologization of our bodies. As such, it’s important we have spaces to process our stories with each other. Yet, it’s important to note that as oppressed people, we are still capable of participating in the oppressing others.

The few times I’ve witnessed our community attempt to break down white supremacy and talk about racism, white intersex people successfully shifted theconversation, almost immediately, back to a conversation that centers them and their experience with intersex oppression.

Spaces where intersex people get together and talk are rare, so it makes sense why someone would want to relate and process, but in doing so, we are inadvertently preventing Black intersex folks in our community from expressing their unique experiences.

Saifa recounted a time when he “was trying to bring up the topics of anti-oppression, racism, etc., in the movement and people lost their damn minds. People were like, ‘we cannot hear it.’”

He also shared, “Anti-black racism showed up when I went to South Carolina on behalf of the MC case [a lawsuit involving the parents of a young Black intersex boy and his doctors] and one of the lawyers was condescending, talking down to me as the only Black person in the room. I was constantly pushing back against his patriarchy and racism.”

He continued, “I feel like people don’t care about issues related to anti-black racism in the intersex community.

“I think there’s some intersex people who really see those intersections, who really are affirming of people of color, but for the large part I feel that the level of anti-black racism awareness ranges from hostility to apathy.”

I asked if people ever seemed to care and he replied, “When funding is involved. That’s when people start to care more. Or, when a group wants some representation of diversity—but I found they wanted a Black face, but weren’t necessarily committed to issues around anti-Black racism.”

As a movement, we can’t only focus on these issues when funding dollars are at stake. That tokenizes Black folks.

Instead, we have to stitch anti-Black racism training, and education around white supremacy, into the fabric of our work together.

Saifa pointed out, “In the world, I’m confronted with anti-Blackness, and it’s par for the course, but it’s particularly more devastating when it’s from intersex people. Why? Because I think, ‘Oh, you understand.’

“Or at least I think they understand, until they say or do things that’s really racist and are unapologetic about their racism.”

5. We Need an Intersectional Analysis to Combat Racist Stereotypes

One of the white people present at Lynnell’s first intersex support group meeting recently told her that she was “afraid” of her at first, “because [Lynnell] had on leather and dark sunglasses.”

I asked Lynnell why she entered that support group meeting dressed in leather, sunglasses, and the rest of her leather daddy alter ego outfit. She responded, “Because I was the only Black intersex person there.”

Lynnell shouldn’t have to feel the need to protect herself like that in a room that was supposed to feel like home, a room where she was supposed to be able to let her guard down amongst people with similar experiences.

Unfortunately, this is the type of thing that can happen when a community doesn’t have a firm commitment to operating with an intersectional lens — one that places its most marginalized folks at the center.

Lynnell needed to protect herself at a support group, and in doing so, made a white person feel afraid, circles back to my main point.

We need to place Black intersex folks and their particular needs, struggles and desires at the front and center of our intersex activism.

If we don’t, we risk ostracizing Black intersex folks, again, within spaces meant to be a reprieve from shame and stigma.

Saifa, someone I admire for their commitment to somatic healing work, believes that white supremacy is rooted in disembodiment “because you have to be disembodied in order to not allow your self to be impacted by the inequity or suffering of others.”

Regardless, Saifa thinks it’s “imperative that white intersex activists feel their feelings regarding any shame they may have as they interrogate white supremacy and its brutal history.”

“It’s only fair that white intersex activists start to acknowledge, as much as their embodiment can hold, the shameful and disgusting emotions that come up after hearing the bitter truth and realities of Black folks and people of color.”

“Doing this work is difficult,” he acknowledged, “and it can bring up things we’d rather not have to face about ourselves.”

Still, non-Black intersex folks need to “confront those feelings and allow themselves to be impacted, then hopefully they can be motivated to action, and allow that empowerment to impact others.”

In taking Saifa’s advice, we can create positive ripple effects throughout our whole community. Doing the work to steer our movement towards becoming an intersectional, anti-racist, intersex movement is a win-win for everyone involved!

***

I fear our movement may have fallen into the trap of falsely believing that racism is a thing of the past.

While our struggles are not always the same, there are important overlaps to take into account, such as our joint history of exploitation by the MIC and discrimination based on how we were born.

Our movement could benefit from taking a deep hard look at our support groups, activist meetings, organizations, and other community and advocacy spaces, and ask ourselves what it means that our movement has attracted so few Black folks throughout the years.

The intersex community still says Black in a hushed voice. Ironic, since one of our movements best chances at seeing its goals realized hinges on the life of a young Black intersex child named MC. When his case wins, and he grows older, we need to have nurtured a movement and community that doesn’t ask him to be anyone other than who he is — and fully embraced as such.